Local woman has cutting-edge surgery to help daughter

Tuesday

Oct 29, 2013 at 12:58 PM

Lois Westermeyer

Tiffany Dennis was pregnant with her second child and knew something was not right.An ultrasound into her 20th week of pregnancy confirmed her suspicion and gave her a frightening diagnosis — her developing baby had the severest form of spina bifida, fetal myelomeningocele."I cried a lot right then," said Dennis, who lives in Chenoa with her partner Matt Gero, their son, Prestin, 4, and their new baby daughter, Meka Gero, 8 months.Baby Meka bares a small scar on her back, the only outward sign of the incredible journey she's already undertaken. Developing like most babies, she cooed and smiled during a recent visit to the home of grandparents Tim and Diana Dennis of Pontiac.Tiffany Dennis, who underwent a groundbreaking surgery Dec. 15 and gave birth to Meka Feb. 7, said she wanted to share her story as October is Spina Bifida Awareness Month."I hadn't really heard of spina bifida before so I got on the Internet and started Googling and the stuff I was reading was terrifying."Spina bifida is a developmental congenital disorder and one of the most common forms of birth defect with a worldwide incidence of about one in every 1,000 births. There are varying degrees of spina bifida, but the most severe can lead to leg weakness and paralysis, excess fluid on the brain that requires a shunt for drainage, orthopedic problems such as club foot and hip displacement, bladder and bowel control problems and lower brain function.Sent to a specialist immediately, Dennis was informed of a procedure that could help her baby, but there was only a small window of time in which to decide and act.The surgery would require operating on the baby before she was born."Spina bifida affects the baby's spine. I learned the spinal cord is one of the first things formed and there was a gap in my baby's spine. (During the ultrasound) we could see her back and it looked like it was broken, we could see a definite gap," she recalled."I knew something was wrong and we hadn't been back at my mom's house five minutes and the doctor's office called and said we needed to come in right away."Dennis and Gero were sent to a specialist in Peoria who told the family they should check out a surgery offered at SSM Cardinal Glennon Children's Medical Center's Fetal Care Institute in St. Louis."They basically open the uterus, work on the baby's spine and put back the uterus," Dennis said. "The surgery is very risky and only five hospitals in the country perform this surgery. I could have died, the baby could have died or I could have gone into labor and viability is not very good that early," she said. "But I decided I had to do this to give my daughter the best possible outcome for her life."Doctors would only perform this surgery through the 26th week of pregnancy, so Dennis and her family had to decide quickly."I did a couple of telephone interviews and then went for three days of testing," Dennis explained, during which time the procedure was discussed in greater detail."In Meka's case, the nerves and muscles that wrap around her spine when it's forming didn't wrap around. They were all bundled up in a sac, outside the spinal column, so they took that bundle and put it back inside and closed the gap."“The mom has to be a candidate and the baby has to be a candidate,” added Diana Dennis, who accompanied her daughter to the facility. "She had to endure medical tests, as well as sociological tests," Diana Dennis went on. "They make sure there is family support as well, otherwise they won't do the procedure."Tiffany Dennis said there was no history of spina bifida in her or Gero's families."I had a cold and a high fever shortly after becoming pregnant and I was also low on folicacid. Those are two links to spina bifida that are known. I want to tell other women who are thinking about becoming pregnant to make sure they are getting enough folic acid.Matt and I talked about having another baby and we just decided to let nature take its course. And the course it took led to spina bifida."Dennis was the 21st patient to undergo the procedure at St. Louis performed by Dr. Mike Vlastos, director of the St. Louis Fetal Care Institute, and Dr. Samer Elbabaa, director of neurosurgery at Cardinal Glennon, and both she and daughter Meka are now part of a study the hospital is conducting on the benefits of the surgery.Although Meka was born several weeks ahead of her March due date, she has already benefitted from the surgery."Two associated problems with myelomeningocele are Arnold Chiari II malformation and hydrocephalus and Meka had both. Spinal fluid normally circulates in an oval pattern, but the gap created by spina bifida causes a break in the circulation. Her spinal fluid didn't circulate; instead it put pressure on her hind brain, pushing it into the spinal column. If a child is born with the fluid build-up (hydrocephalus) they will need a shunt for drainage. The restoration of circulation pushed the brain back up and that condition corrected itself, which I though was very neat," Tiffany Dennis explained. "About 40 percent of children who go through this surgery avoid a shunt and I wanted this chance for her," she added. The family just learned a shunt was ruled unnecessary in Meka's case.Meka also has other problems associated with spina bifida, including hip displacement on the right side and club foot with both feet."Her legs work from the hips and knees, but so far no feeling is shown from the knees down," said the baby's grandmother as she cradled the newest member of the family."Her leg problems are coupled with club feet. She attends therapy once a week, where they are working on her hip and with a harness she had to wear it has helped. She has learned to roll over and sit up and that's been great," said Meka's mother.Dennis added they wouldn’t know the full extent of Meka's ability to walk until her club foot condition is treated."She had casts on her legs and feet for a month and will shortly undergo surgery to cut and lengthen the Achilles tendon in each foot. Once Meka's feet are flattened, she will be able to begin bearing weight and they will know whether she can walk with the aid of braces," grandmother Diana stated."I'm just proud of Tiffany because this is not easy, it's been a rollercoaster," Diana Dennis continued. "I learned that about 64 percent of mothers abort a baby who has this diagnosis. Some states even push the mothers to have an abortion ...," she said her voice trailing off. "Our heads were swirling, because you think about what the baby's life is going to be like, and maybe it crosses your mind, but I can't imagine being without her now," the proud grandma states.“During pregnancy, I probably spent every day in tears stressing out. When I had to decide, I went with my gut. Dr. Vlastos was very down to earth. I felt comfortable with him and the whole FCI team was very friendly. Now that she’s here, I just enjoy spending time with her,” Dennis said. “She’s just my baby. That’s really all that matters now.“With Prestin it was exciting when he learned to crawl and walk, but with her, every little thing it’s so exciting. I appreciate the milestones a whole lot more with her.”

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